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many fluids or cramps. but basically it's a treatment which is a big burden and somewhat uncomfortable. the next type of dialysis is peritoneal dialysis. we use the lining of the abdominal cavity as a membrane where waste products can leave the body and can go into peritoneal cavity. so the lining of the abdominal cavity, the lining of your abdomen can act as a transport. waste products can go across that and substances can go into your body from that. peritoneal dialysis, the treatment goes into abdomen, fluid is administered into the abdomen and stays there for a while and waste products go
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from the blood into that fluid and after a period of time the fluid is removed. you have removed increment of waste products and water by the lining of the abdominal cavity acting as a membrane which removes fluid from the blood into clear solution that you have put in and the next slide shows actually an exchange because each one of those is an exchange. that doesn't show too well. in the first picture, fluid is administered into the abdominal cavity and it stays there. usually it will stay there 4 hours to 6 hours. waste products -- i'm sorry. i have got that wrong. the first stage is the drain. the fluid in there is removed. then fluid is put in, that's the fill, fresh fluid, then there
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is a disconnect and the fluid dwells in the abdomen for an x period of time while products are removed and excess water is removed into the abdominal cavity and then it's putten. it's a very acceptable and reasonable anden encouraged form of dialysis. patients can manage it themselves. they don't to have go to a dialysis center. they have to do it four times a day. if they have a clean environment and able to manipulate with their fingers. it's encouraged these days to do peritoneal dialysis. the next slide shows that peritoneal can be done at night. basically what you have is this patient is sleeping and has a tube coming out of his abdomen and he has a machine which is a large bag
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on that with fluid that goes into the abdominal cavity and the fluid goes out. this is basically a timer. a very sophisticated and accurate timing device that puts fluid in and out and then the tube the fluid goes out and flesh -- fresh fluid goes in. there is a substantial amount of patients who like peritoneal dialysis who have over night dialysis of this type which is where they don't have to do exchanges during the day. so, the last item that we talked about i have already mentioned most of what's on this slide. no dialysis can be an appropriate choice for
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particular patients. the kind of patients as i mentioned before would be a patient who has a very bad metastatic cancer and they have a short time left to live but meanwhile their kidneys have given out and many of the symptoms are due to arrhythmia. we talk to them about it. they will make a very reasonable decision. they will say, i have to do this for 3 months. i will to settle accounts. that can all be discussed with the physician, hopefully a sensitive physician and of course a social worker who is always involved in these issues. the final slide that i have is perhaps the most pertinent to this session and that is the
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types of disabilities that a patient on dialysis has. i have not listed, but i listed one of the major ones. one is financial. this is a very expensive treatment. dialysis maybe cost may $70,000 a year. medicare covers most of the expense. this is a disease. the only disease that medicare covers as a total disease, not just dialysis. the dialysis patient breaks their leg, they are covered in treatment. if you have any stage renal disease, dependent dialysis, medicare will pay most of it. there are some expenses that you still incur. medicare, and this is only disease that medicare covers as a disease.
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i don't think they will have do that again. they are sorry they did that. because they thought there would be a few hundred patients on dialysis and now there are over 400,000 patients on dialysis. it's well run by medicare and a good job. it's a model for many diseases. in addition many patients have private insurance. some patients have no other way and they wind up on medi-cal which covers dialysis but there are still financial obligations. there are payments and drugs they have to buy and significant financial problems for patients on dialysis. the question always comes up, can i continue to work? if you are retired and over 74 years
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old, it's not an issue, but if you are 34 and you are the breadwinner and can you continue to work while on dialysis? we encourage you to continue your job even if it's cut back to part-time. not to become totally disabled. dialysis can be done. some units can be done in the evening, from 6:00 p.m.-9:30 p.m. at night. some dialysis centers are open in the evenings. some can do it three times a week and weekends. we can help if necessary to talk to the employer and say this person is able to work on his non-dialysis days. it's an important issue for younger
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patients. transportation is a very very important issue. patients have to get to a dialysis unit three times a week and how do they get there and how do they get home after being on this treatment for several hours and you are wiped out. some young people able to take the munis or drive themselves home. we have 22 years old and they are okay and they get off dialysis and get dressed and go out. but most patients on dialysis are older. they have to have someone bring them and take them home. if they have a spouse or someone next door, that's great. if they don't, they are very dependent on public transportation and the para transit system in san francisco has been very good.
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they automatically qualify for transit and they get priority and don't have to wait. and there are -- vans that pick up patients. transportation is always an issue. medicare does not cover transportation unless it's a crisis. they will not cover transportation. it is also an expensive issue. last but certainly not least that i have listed here are family issues that are related to dialysis. the family is totally changed whether it's a husband or wife if they are suddenly disabled and going through dialysis several times a week. it's a life saving therapy which can keep people functioning reasonably well,
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remarkable therapy, not appreciated when you have cancer drives and breast cancer drives. not appreciated what a miraculous therapy this is and hundreds of thousands of patients continuing but with a social and financial burden. thank you very much. >> thank you, dr. wiel, shall we take comments after each speaker or would you prefer to do it at the end? after? okay. thank you, dr. wiel. >> i will now like to invite
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our second speaker from kaiser hospital. i'm sorry. i have forgotten your name. >> good afternoon, everybody, my name is karen sharpel a social worker at the medical center down the road. thank you very much for having me today and a special thank you to tatiana for inviting me. i have worked with dialysis patients since i started my career in social work. i
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actually started working with dialysis patients in the bronx new york. most of the patients seemed to struggle with similar psycho social issues, stress, poverty, under achieving education, under employment and at that time i thought perhaps the issues can be explained because of the environment of north bronx, new york. then i continued with my work with dialysis patients and started to see the same thing from all economic backgrounds. there were family and brothers and sisters on dialysis. i think and dr. wiel started to say about this that is what is
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unique is the average person with this disease doesn't necessarily look sick. some of their catheters are covered with clothing. it's wonderful to have these technologies with dialysis. but those modality will be replaced at 10-15 percent of kidney function. you are not getting 100 percent. even though they are getting these wonderful technology with great treatment, at best their bodies are functioning at 15 percent with the general population. as the doctor mentioned, the biggest is fatigue and -- and
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difficulty ken -- concentrating and focusing and even if you are going to get dialysis, it's still very physically demanding on the body. i work primarily with the pediatrics. the call that i get is that johnny can't pay attention, he's not focusing. he's putting his head down in the class. he must have attention deficit disorder. i try to educate them and say no, it's the kidney disease. this is what it looks like. this is what it can look like specifically in children. a lot of times anecdotally it
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may present like adhd. really it's the uremia. i can tell you that i do not have students that don't have any distress. many of them finish school at home. again, there is a lot of loses there too. there is lots of socialization. they are not able to go to school, go to promise and not able to go to college sometimes because they haven't finished their ged. you can imagine them again
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going into future and how does that translate to adult life and again, getting college degrees, going to technical vocational school or even holding down a regular job, finding a job that will accommodate around a dialysis schedule as well can be very challenging. you can imagine applying for a job says i dielz dialysis monday and wednesday and available tuesday, thursday and saturdays. it's difficult to find employment to be accommodating around that. that's why 3 years after dialysis less than 5 percent
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are working and 25 percent are keeping their regular jobs. the wait list for a kidney transplant is a little over seven 7 years which is the last i heard. that's the last statistic i heard. it is a long hard life. that said, folks are incredibly resilient. people, they amaze me everyday of what they are able to accomplish when they are having to manage and navigate treatment and coming to dialysis and medications and refills and follow up appointments. it's a very rigorous schedule. there is not a whole a lot of flexibility with managing this chronic health care disease. but folks still manage to do that and still be present for their families and hold jobs even when they are dealing with 10-15 with what the
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general population is able to function with. i would be remiss to as being a social worker to talk about the relational and the mood difficulties. relationship difficulties, having a family member on dialysis is a significant extreme stressor in most situations. it is just even the logistics of managing, getting the person to their treatments and making sure that they are home every night to hook up to peritoneal dialysis and transportation issues, co-pays, medications. keeping the insurance active. that's another huge issue and making sure you are on top of those things and not missing doctors appointments and in addition not only the person who is on dialysis and not being able to work as much or contribute as much to the household than they did then you have someone else in the family who steps in to
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provide support. and so then, again too those responsibilities or the roll that that person previously played there is a hold as well. there is a significant impact. it is also for women in particular, for women who are of child bearing age and hoping to have a family. getting pregnant on dialysis is, i don't want to say nearly impossible, but it's very very difficult. the patients that i have known who have been pregnant who have dialysis have to go do hemo dialysis six 6 days a week to support the baby the whole 9 months and it's still a complicated pregnancy. even folks who have had a kidney transplant and perhaps it's been 15 years and the transplant isn't functioning as well and they want to
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start a family, the physician may inform them and give them a choice and because of the extra stress that this could cause on your kidney, this may put you back on dialysis. these are very difficult choices. it's not just the management of your own health but it impact your relationships, family planning and care for other members of the family as well. it really does impact every area of folks lives. there is a lot to consider. it takes almost constant coordination, management of the financial aspects, the physical aspects if you are taking treatments at home. there is emotional health of these patients is another huge issue. usually after about 6 months on dialysis, it's very common for folks to start to experience symptoms of depression.
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sometimes very severely. there has been huge loses in their lives, huge changes in their lives and the loss of independence that many folks experienced either with transportation and not being abe to be the breadwinner in the home it's very difficult for folks who never imagined themselves in that position. depression is very common, anxiety is very common. and again, getting coverage for these kind of treatments for psycho therapy can also be a challenge too. again, dialysis is a miracle of sorts that allows a person to live life and enjoy their friends and family and jobs, but at the same time, it can be a very difficult life and it touches
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every corner of these folks lives. and oftentimes you meet them on the street and you would never know that they are copying and persisting through many challenges. that's all i have today. i appreciate the people i have gotten to know on dialysis. thank you for allowing me to talk today. >> thank you. are there any comments or questions? councilmember zerda? >> i want to say thank you for touching on the aspect of the end stage for the kidney use. for younger population, oftentimes we hear about
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certain segments along the way about which populations are being affected. i myself had to deal with chronic health issues through high school and college. you covered what it was. managed time, medications, hospital visits, all of those things. it's a huge order for people at such a young age. i appreciate you touching on some of those issues. >> other councilmembers? i have a question for each of the speakers. dr. wiel first. you described peritoneal dialysis very well. i wonder how much discomfort is this person in. you show them lying peacefully in bed, but is
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there discomfort involved? >> there is very little discomfort involved in peritoneal dialysis. the abdominal cavity holds a lot of extra fluid and there is at the first few exchanges when the catheter is first put in that stays there, there may be some adjustment discomfort, but the actual fluid going out which is the first phase, emptying out what's there and then putting fluid in and the fluid staying in is essentially asymptomatic. it's very free and as you saw there are patients who sleep and at first, i thought i wouldn't sleep with this business going
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on. i had a patients item -- tell me it took a few months to get used to it. the procedure and technique does not cause any pain. if it does, there are problems. only if there is an infection and there is not something wrong with the fluids tracking. generally it's an asymptomatic. it's burdensome. not as much as hemo dialysis, but it does not cause any pain. >> thank you very much. i want to thank you for bringing the psycho social issues. it's an area of my specialty. are there organizations that tend to these folks with psycho social needs? >> there are a few support organizations. the national kidney foundation is our biggest support in the bay
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area. they have a peer to peer support program where patients can actually call and dial into a phone number and speak with another esrd, end stage reasonable disease support as well and get support that way. there are several organizations and foundations. i think the focus is often on awareness which is huge and advocacy and financial assistance is another big issue. as far as the particular for mental health support, it can be, there are support groups for folks who have end stage kidney disease honestly. in my experience those are typically difficult for folks to attend either because of the rigorous schedule of dialysis doesn't always permit for those activities as well
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as the logistics for transportation and managing everything that folks have. outside of that, i frequently assist folks with either with accessing whatever their health insurance plan is for getting hooked up with a therapist or counselor that way. oftentimes that can, depending on the insurance carrier that can take weeks to months. but we do the best we can and find what's out there. so there are things out there, oftentimes it's a bit of a patch work. i wish there was more. i wish it was easier to access. >> is there any comment from staff? >> yes, thank you. since this is a meeting of the mayor's disability council which is actually a group of people with disabilities who make policy recommendations to the mayor and board of supervisors
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regarding disability specific issues, is there something that each one of you can think of that the mayor's disability council can make a stance on or make recommendations related to this issue that will help you with your work? >> i think there are and i'm glad you asked the question and i was thinking of something that i would like to address. i can think of two areas. one is in particular is to continue to make transportation assistance available and being conscious of that and making that. that's one burden that if patients can be lightened for burden, i think it's very important. they have enough to do. they have to get to
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dialysis and they have to get picked up. that would be one area. another area would be for the city of san francisco and state of california, united states to help patients who want to work and be able to encourage employers to do whatever necessary groundwork to help patients who want to work, continue to work or assume work while on dialysis. a lot of younger people, 30s, 40s, 50s who have jobs that they theoretically can continue to do very well. there are sedentary jobs and counselors and so on. when these people dielz most
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function well. if that can be helped by the committee, that will be very helpful to mostly young patients. >> i would want to second that. i agree. i think if there could be because the specific needs of dialysis patients, it is such they are so unique to their disease in comparison to other disabilities. also because it's often so misunderstood by folks in the general public who again look at a person and they don't look like anything is wrong with them. employment is a very big issue. i don't know if there could be a special department or some sort of support for folks who were on dialysis and either finding employment d

March 1, 2014 2:30am-3:01am PST

TOPIC FREQUENCY San Francisco 2, Putten 1, Uremia 1, The City 1, Peritoneal 1, United States 1, Karen Sharpel 1, Johnny 1, North Bronx 1, California 1, Bronx New York 1, New York 1, Zerda 1, Dr. Wiel 1
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